The Conference on Retroviruses and Opportunistic Infections (CROI 2016)—an annual gathering of researchers, clinicians, advocates and people living with HIV—opened Sunday in Denver. The meeting drew more than 3,000 participants from 65 countries, even as many would-be attendees watched remotely due to limited funding or concerns about traveling to the United States.
Last year’s CROI took place under a cloud of uncertainty as the Trump administration cut funding for domestic and global HIV services and took aim at federal health agencies including the Centers for Disease Control and Prevention and the National Institutes of Health (NIH). This year, several presentations assessed the damage at the local, national and international levels, in particular due to the dismantling of USAID and threats to PEPFAR (the U.S. President’s Emergency Plan for AIDS Relief).
But some speakers noted that the administration’s proposed cuts have been partially rolled back, court decisions have blocked some harmful policies, scientists and advocates are not retreating and the tide may be turning.
“We need to start planning now for the great rebuilding,” long-time AIDS activist Peter Staley said at the opening session.
One casualty at NIH was Carl Dieffenbach, PhD, long-time director of the Division of AIDS at the National Institute of Allergy and Infectious Diseases, who was reassigned to the Fogarty International Center late last year. In recognition of his efforts, he received the CROI Foundation’s first-ever Lifetime Achievement Award at the conference.
“Disease does not respect borders, and HIV will not end when it is controlled in one country,” Dieffenbach said in a video message. “We must continue to espouse the principles that health, and access to health care, is a fundamental right no matter where you live, who you love or the color of your skin.
Staley, a member of ACT UP/New York, cofounder of the Treatment Action Group (TAG) and board member of PrEP4All, gave the annual Martin Delaney Presentation, named in honor of the late founder of Project Inform.
Staley recounted how Project Inform and TAG “ran a bicoastal pincer move” against former National Institute of Allergy and Infectious Diseases director Anthony Fauci, MD, urging him to endorse a parallel track proposal to speed up early access to experimental HIV drugs. “The victory put AIDS activism on the map as America’s movement de jour,” he said.
Staley recalled that the last time he spoke to such a large group of HIV medical experts was at the opening ceremony of the 1990 International AIDS conference in San Francisco. At the time, there was a divide as AIDS activists demanded a seat at the table and some scientists were “freaked out” by their anger and radical protest. But since then, he said, “We learned from you and adjusted our demands accordingly. You learned from us and adjusted clinical trials and access programs. Science became our shared religion.”
“Years later, we are now so commingled that when new epidemics hit—like Ebola, monkeypox and COVID, we all jumped back into action as one unified voice, unwilling to let our collective power go unused against the new threat,” he continued. “Here we are now fighting another battle, the Trump administration’s war on science.”
Speaking of the administration’s targeting of USAID and PEPFAR, which support treatment for people with HIV in low-income countries, Staley hearkened back to his own struggle with AIDS.
“I was remembering the night sweats from the first few years after my diagnosis, when I reached my own CD4 nadir of 103—the soaked sheets, the understanding that these fevers were a manifestation of the war going on between my immune system and the virus,” he said. “Now I was imagining hundreds, if not thousands of people in Africa waking up on soaked sheets, feeling the virus for the first time in many years, suddenly robbed of the hopeful futures they had looked forward to just weeks earlier. Trying to imagine that fear filled me with rage.”
Staley noted that the past year reminded him of some of the darkest early AIDS years, especially after researchers at the 1993 International AIDS Conference in Berlin announced disappointing study results showing that AZT (Retrovir) did not improve long-term survival.
“We couldn’t yet see a light at the end of the tunnel, but giving up felt far more frightening than plowing on,” he said. “Besides, you still wanted to be in the room if the great pivot finally arrived.” And it did. Three years later at the 1996 conference in Vancouver, researchers reported that combination of antiretroviral therapy including a protease inhibitor could finally keep HIV under control.
Staley suggested that we are doing better now than we were at the start of last year. Congress rejected Trump’s proposed reorganization and drastic funding cuts for NIH, NIAID actually received an increase, and PEPFAR—though “battered and bruised”—is still standing.
But only continued pressure will prevent further backsliding.
“Resistance comes in many forms,” he said. “Obviously, I love the flashy stuff, but equally important is the often hidden ‘keep the lights on’ approach of the thousands of public servants who were not let go. It should be a major goal of our resistance to save as much of our core institutions as we can so that they can be more quickly rebuilt once the opportunity arises.”
Leading HIV cure researcher Sharon Lewin, MD, of the University of Melbourne in Australia, and Linda-Gail Bekker, MBChB, director of the Desmond Tutu HIV Foundation in South Africa, who led a pivotal trial of twice-yearly lenacapavir PrEP, also spoke at the opening session.
“From the beginning, activism has become advocacy and people have stepped up, shown up, stayed up, and never given up, regardless of whether the battle has been with the virus directly or governments, drug developers, funders, officials, heads of state or people who inadvertently aid and abet the virus,” Bekker said. “We know that this virus does not stop or rest, and neither can we. We will not finally end this epidemic without a vaccine and without a cure.”
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